Good News!

Posted on May 18, 2013 by

Just a quickie. I’ve had the most awful week with my POTS, the full gamut of symptoms from heart rate and BP going bonkers in every direction, weakness and exhaustion, difficulty breathing, those internal ‘vibrations’ and pretty much everything else that goes with POTS. It scared me. I thought I’d had a sudden relapse to where I was when it first became bad 8yrs ago where I was half-conscious and so ill I thought my time was up. I do not want to go there again. I have been able to do barely anything this week.

The reason for it? It could be two things. Aunt Flo was due to make her unwelcome monthly visit a week ago but seems to have taken a wrong turn and is now a week late. POTS always flares up the few days before but this has been horrendous. It may be worse this month because Aunt Flo is messing about with her sat nav and got stuck in traffic and hasn’t turned up yet. And/Or I tried for the first time a Juvela White mix to make a loaf of gluten free bread although they use codex wheat starch in it. The bread came out wonderfully but I’m wondering if I’ve been glutened. I have coeliac disease and perhaps even less than 20ppm of it is too much. It would make sense as I’ve had stomach pain 3 times this week (eaten it every day) and being glutened always makes me feel exhausted and weak. So it could be that too. I didn’t eat it today and this evening I feel slightly perkier  energy wise. Coincidence? Maybe. I may try it again once Aunt Flo has been and gone again to check if it was the bread as well making me so bad this week.

So after a horrible week to receive a brown envelope from the DWP this morning I thought I wouldn’t be able to stand reading that they haven’t changed me to the support group and I’ll still have to appeal. I have waited 5mths for their reconsideration decision. Today was D-day, decision day. The envelope was very thin and contained just one sheet of paper…

‘We have decided to change the decision and have awarded you the support group’

!!!!!

RELIEF!

Someone has finally seen sense.

They of course didn’t say how long that award is for and I need to find out. Whether it’s still the 18mths from the original decision (which is now 13mths seeing as they’ve taken 5mths to get round to looking at it) or they’ve made it longer I have no idea. But for now I can relax a little… until the next time.

Posted in Disability Benefits, POTS | Tagged , , , , | Leave a comment

Still shrinking

Posted on May 12, 2013 by

After what seemed like an endless plateau of no weight loss, although in reality it was 3 1/2 wks, I was getting frustrated. Up til then I had been regularly dropping at least a pound a week since the end of Jan and had only 11-12 pounds to go. I decided I had to shake my metabolism awake after 3mths of eating approx 1200 calories per day. I had discovered along the way that my body seemed to burn more calories than the online calculators suggested. Whether that’s down to my health problems and a higher heart rate when sitting up or standing or I’m one of the lucky ones who is genetically designed to have a higher metabolism, who knows. So knowing this I decided to eat another 150-250 calories per day and occasionally a little more! Well whadda ya know? My body dropped 2 pounds this week in the space of three days. Eureka!

It feels soooo good to see the scales inching downwards towards my goal. Even better my body fat % has dropped quite a bit with those 2 pounds so I know it’s fat that has departed my body and I’m not losing the muscle which I’m trying desperately to cling onto and try and increase due to many years of being sedentary due to ill health which has resulted in some muscle loss and weakness. I’m trying to do as much as I can from using muscle stimulation pads, which by the way has worked wonders. 3″ off my jelly belly in the past month and my stomach muscles feel much firmer. It can only help with my nervous system issues. I do 10mins of pilates once a week, laying down type moves and using my own body weight as the resistance with the occasional resistance band moves. I also try and do a few mins of using a foot peddler machine sat down as many times as I can per week. Even that little amount of exercise has helped, I’m actually surprised how much it has increased my muscle strength. I thought nothing but an hours intense cardio/lifting etc everyday would do the job but as Tesco says, ‘every little helps!’ and it certainly does!

Posted in Achievements despite being ill, Exercise/Pacing, Losing weight with chronic illness | Tagged , , , , , , , , , , | 6 Comments

What a week!

Posted on April 27, 2013 by

Well two weeks actually. Last week I had not one but two district vampires arrive to take my blood. I had visions of them taking blood from both arms at once lol I did joke and ask if one of them was there to hold me down and the younger one said no, she was there to hold the other down as apparently she was still training even though she was definitely old enough to claim her bus pass and pension! The younger of the two said the older one may have to prick me 5 times with the needle to get it right. You can imagine how I felt! Especially with having EDS and dodgy skin and veins. Luckily the younger one ended up doing it and as she did so she said to the older one, you can see I have gone in deeper under the skin, on the last patient you were just under the skin. Thank god she wasn’t the one doing it on me then! I was also mildly surprised she took five tubes of blood from me, usually its two or three. Lord knows what my GP is testing in addition to my usual. On the 5th tube my vein gave up and collapsed and she said I would have a bruise, well no s*** sherlock! I have EDS I ALWAYS get a bruise! and what a lovely multi-colour bruise it was, along with some tearing of my skin and what looked like a slit as if she’d used a massive needle.  Still, it’s healing now and all that remains is an odd, swollen lump.

Tweedledee and Tweedledum then had to take my BP because it was so high when I saw my Dr. Seriously it was like like some bizarre film. They BOTH had a go, well at least 3 times each! The younger one couldn’t feel my pulse as it was weak. I just smiled knowingly and said that can be normal with me and POTS. She just could not get a reading at all. It was a manual blood pressure thingy rather than digital, she said GP’s don’t have a clue how to take BP so have to use digital ones lol After her faffing about TweedleDum had a go but didn’t start off too well as she couldn’t work out which way  round the cuff went as it looked different to the one she’d used before, then she couldn’t read the dial/gauge thing because she didn’t bring her glasses. She eventually managed to get a reading 140/90 but of course TweedleDee decided to double check it and had another couple of goes and STILL couldn’t get a reading. By then I was getting bored so asked them to get out my digital monitor that I have been using myself for the past 8yrs. I had it strapped on in seconds and TweedleDee remarked that I was a pro, I reigned in the urge to laugh after their fiasco. Anyway, it came out at 160/110 but is anyone surprised after all their mucking about! Of course I checked it throughout the day after they’d gone and an hour later it went down to 117/82 and stayed down ever since. It was 115/71 yesterday as well even though I have had a stressful time of it this week….

My Mum who is my full time carer had her follow up colonoscopy this week . My POTS as per usual went nuts, it over reacted and I had that sunburn type heat radiating from my legs and which proceeded to spread every where else then my arms and legs went numb. I felt so on edge all the time, I didn’t sleep well for 2 nights. Plus I have felt drained of all energy which has affected my breathing since. No doubt it’ll take to the beginning of next week to recover. I was also worried because the hospital had restricted anything but emergency and essential visiting because they had a second wave of that horrid nororvirus. I already have a fear of stomach bugs, one landed me in the hospital years ago. With having POTS, within half an hour of something like that you can bet I’ll be at the point of collapsing and struggling to breathe. The morning she went in they actually lifted the restrictions and no sign of it so far. That’s the last thing I need right now. That kind of virus also knocks me for six for several months. Anyway, they found one polyp, which they saw on her sigmoidoscopy four weeks ago, this time they managed to remove it. Nothing else was found, thank god. They’ve probably done a biopsy on it but the discharge sheet had no follow up appointment or another Colonoscopy to be done on it so fingers crossed it’s all good.

If all that wasn’t enough, the day she was in hospital having it done, my lettings agency rang asking if a landlady can come see the house today (Sat) as she may buy it. My present landlady wants to sell to another landlord yet is asking silly money for it, she wants 30k over the market price and can’t think why no one wants to look round. She blamed it on my mum for not washing the net curtains in the winter! Anyway, this woman who is looking round lives in London but has another property down here she rents out and wants another one. I doubt she will buy it as it it so overpriced and also the bathroom is many decades old and needs a complete new suite, the windows need replacing and we have a mould problem not to mention the decor is really dated. There’s another up for sale near by which is a detached with 5 bedrooms for the same price! This one has 3 and semi-detached to give you an idea of how overpriced it is.

Ooh, I forgot to mention, I’ve been trying to get hold of my blood test results but no ones phoned me back. I have this problem every time and have to chase them up for weeks. Next week will no doubt see me phoning them relentlessly trying to speak to someone about my results. I did however get my GP to agree to prescribe me Lyrica instead of Gabapentin, tough to get here as it costs so much. The box of pills have been sat on my shelf for a week, that side-effect list is downright scary! Terrifying in fact. Rapid weight gain?? Er, hello, I just bust a gut getting rid of 16 unslightly pounds and still have 12 to go. Swelling of extremities due to water retention?? I’m on florinef which already retains fluid! Not to mention dizziness, low bp and numerous others. Isn’t this meant to actually help me, not give me the same symptoms I already have or make them worse lol It really worries me about the sedation effects too, when I get dopey and tired I have to really focus to breathe already, so I’m really wary this is going to dope me up and affect my breathing. Tramadol did exactly that. I’m in two minds about taking it as you can imagine. She did give me the lowest dose possible to start, 25mg. I guess I can always stop it again if after a week or two if the side effects are unbearable. I can only hope I’m one of those whose body loves it and it ends up being the best thing I ever did.

 

Posted in Catching viruses, Ehlers-Danlos, Everyday living, Losing weight with chronic illness, Medicines, Stress, Test Results | Tagged , , , , , , , , , , | Leave a comment

Urgh and Blah

Posted on April 13, 2013 by

Yep, urgh and blah is exactly how I’ve been feeling the past few days. Dear Aunt Flo, that annoying, useless, unwelcome relative that comes to  intrude and disrupts everything once a month. My POTS has gone bananas this time. Heart pounding, air hunger, extreme exhaustion are the symptoms Aunt Flo has brought with her. At least this time she didn’t decide to wake me up and announce her arrival at 5am as per normal (what is up with that?! EVERY freaking month it starts at 5am) rudely interrupting my much needed sleep with raging pain which of course I cant do nothing about as I take all my painkillers through the day and have nothing left until 8.30am the next morning. Spending nearly 4hrs at silly o’ clock, rocking back and forth and moaning like a woman possessed looking longingly at my packet of painkillers is really getting old now.

Anyway, my doctor came out to see me at home last week. I had to give a crash course in POTS in the space of 20mins and I still had only touched on the major symptoms never mind the whole gamut of them and how they affect me but hopefully she got the gist of it. At least enough for her to write a supporting letter for my benefit appeal which she was happy to do. She’s also going to find out what other painkillers are suitable for me to take in addition to what I already do. Gabapentin was a suggestion. Of course I am limited due to meds making my breathing issues worse and anti-inflammatories are off the menu because of stomach issues. I definitely need some better pain control though, I’m just wary after the last time I tried something different; Tramadol. Jeez, that was bad, did nothing for the pain but made me so weak and exhausted I had to force myself to breathe as my breathing was so weak and shallow.

She also suggested speaking to a specialist to find out if there was anything new for POTS. Hah, I wish. She mentioned neurological rehabilitation and graded exercise (not on your nelly!) There was a few things she didn’t seem able to grasp but she was nice enough. POTS is such as complex and rare illness I don’t expect any GP to understand all its idiosyncrasies, it’s a surprise when a GP has actually heard of it after all.

I’m still waiting to have my blood taken, she forgot to bring her kit with her and no one seems to do anything in a hurry at that Dr’s surgery. So I could be waiting some time for a district vampire (nurse) to come and do it. I just hope I’m not kept waiting for this letter to be written as it needs to be sent to the DWP asap.

I’m still doing rather well in the weight loss area. 16 pounds down in total since the end of Jan. Of course like anyone, I wish it would all just drop off overnight but I have another 10-12 pounds to go. I should get there by the first week of June. I shall reassess when I drop another 10 pounds as I’m not sure if I’ll need to lose a few more. Aunt Flo’s visit is certainly challenging, I want to eat my weight in chocolate right about now. Must resist! In my weight loss journey I have found something interesting though, it appears my body burns off more calories than I thought. Seeing as I’m rather limited with mobility and unable to move about and do too much I had been estimating I burn around 1700 calories per day and 1600 on days I’m really bad and can’t do anything except drag my useless body the 15 paces to the loo, that includes my calories burnt while doing sod all, in other words my BMR. However, working out how many pounds I lose in a month compared to how much I eat I have seen that actually I burn off closer to 1968 calories per day on average. All I can think of is either my BMR is higher than the average (occasionally some people’s BMR does run a little higher) or having POTS is of some use after all. A higher heart rate when doing anything, even just sitting upright or standing in one spot burns a lot more calories than if I didn’t have POTS. Whichever it is, it’s definitely helping me to lose more than the 1 pound per week that I had planned to lose and set my calories to according to the online calculators.  It’s nice to know I can eat a bit more per day if I need to. It must be the only positive to having POTS. Bring on the chocolate!

Posted in Everyday living, Exercise/Pacing, Losing weight with chronic illness, Medicines, POTS, POTS/EDS and time of the month | Tagged , , , , , , , , , | 6 Comments

Lotsa stress!

Posted on April 2, 2013 by

I had a stressful time of it all last week. My Mum (and carer) had to have some investigations at the hospital for stomach related problems and I don’t deal with stress at all well. The POTS goes haywire. I ended up getting only 4hrs sleep a night for 4 days and felt so awful I had to crawl to the toilet. Lack of sleep also means the POTS gets worse and makes dealing with anything stressful almost impossible. She has to go back in 4 weeks for more tests so another terrible week is in my near future.

Not only that but my Dr finally got back to me (I’ve only been waiting 2wks!) for my medication review, some blood tests to be done and for her to write a  supporting letter for my benefit appeal. She is coming to see me at home next week. I hope it all goes well. I think I’m more worried about what will happen about my liver function blood tests. If it comes up abnormal again, this will be the 3rd time. It scares me I may have yet another illness on top of everything else I have, the further tests that will need to be done which will be a nightmare and a massive task if I have to go anywhere to have them done which will mean many, many weeks or even months recovering. Not to mention the long term problems with a liver disease. I’m guessing it’s likely to be an autoimmune liver disease as I already have other autoimmune disorders. What happens about the painkillers I have to take all the time, I can’t face being wracked with pain any more than I already am if I can’t take any due to a liver problem. I’m trying my best to put it to the back of my mind until I need to face it but I’m really worried.

I had contact with the DWP today about my ‘work related activity’. I had to enroll on an online course and tell them which one  I had chosen. I had fears I’d be told I’d need to do one lesson per week or something and have to show them the progress reports that this particular course provider offers which details how much time you’ve spent on studying but all I got was ‘let me know how you get on’. Much easier for me to do it in my own time which can mean a few minutes a few times a week and some weeks not able to do any at all, all while half laying on the bed of course. The energy spent on that means I may not have the energy for even the basic necessities such as a bath. The courses are not even accredited and count for nothing. Complete waste of time and my very limited energy. If they are forcing me to do this then at least give me a course that is accredited. I so wish I could work to get out of this benefit system.

Posted in Disability Benefits, Everyday living, POTS, Stress, Test Results | 3 Comments

Control Freakery

Posted on March 17, 2013 by

I’ll admit it, I like to feel in control of everything. I’m sure a lot of those with chronic illness feel the same. Trying to stay in control of what happens and when makes me feel safer, keeps my illnesses from freaking out. Plus on the whole, I can only deal with one thing per week, otherwise my body can’t hack it and freaks out. So when there’s lots to be done and sorted out, I like it to happen in the order I have decided it should go in my head! Of course, does it actually turn out that way?? Er, no!

So, I had asked my Dr to phone me back two weeks ago to sort out a medication review, write a supporting letter for my benefit appeal and to send a district vampire out to re-do my blood tests. I’m still waiting! So now I need to chase all that up again. BUT it’ll have to wait now as my air conditioner desperately needs servicing and is a year overdue (oops!). I can’t risk it going kaput when the weather starts warming up soon.

I had also planned to get my hair cut as well, it is sooooooooooooooo long now as every time she has come here to do my mums hair, I haven’t felt well enough for her to do mine so it’s been a good year since my hair has seen a pair of scissors. I did ask my sons girlfriend who is training to be a hairdresser but even though she’s been training for 2yrs she still isn’t trained enough to do layers yet (surely hair cutting isn’t that complicated?!) My hair is so long, so thick and lately very dry I’ve been getting most of it all knotted and matted within hours of brushing it, it desperately needs a damn good cut. Phoned hairdresser twice, no answer, no call back. She’s obviously swanned off to her house in Spain for a few weeks.

As you can see, my carefully thought out plan has come to nothing! I must email the air con man today and see if he can come out this week. Bets are being taken now…. will he be available or will that all go to s*** as well? lol

I’m trying to fit everything in these past few weeks before my mum goes for her hospital investigations end of this month. It’s stressful for her and me and will upset our normal routine for at least a week. None of us are looking forward to it.

I also have been set my first ESA ‘work related activity’. I have to enroll on a training course, online by the 2nd April. So thanks to some jobsworth who thinks that in 18mths I will be fit for work and has overridden 3 specialists reports to decide that (even though I’ve been mostly bedbound for coming up to 17yrs!) so I am forced to ‘prepare to return to work’ from my bed by doing some free online course that is not accredited and means nothing to no one, otherwise my paltry £116 a week will be cut, ‘sanctioned’ in their words like I’m some naughty little schoolgirl . What sick country are we living in. So much for the gov saying those who are genuinely sick will have nothing to fear and would be protected. Doing this ‘course’ means taking up a large amount of my very limited energy, which could quite possibly mean I will be unable to do even the necessary things such as have a bath. I just hope they give me at least a couple of months to do even one ‘lesson’.

I’m still losing weight. Some of you may have noticed I’ve added a little widget down the right hand side of the home page which shows my weight loss progress. I haven’t weighed myself this week because mother nature brought me her monthly ‘gift’ (6 days late, how dare you interrupt my well thought out plan!) so there’s no point disappointing myself by standing on the scales and seeing several pounds of water weight added so I shall be leaving the grand weigh in til approx Thurs/Fri this coming week. I should be on course to lose around a pound or a pound and a half so keep an eye out on the weight loss widget! Once it reaches 25 pounds lost, then my goal has been reached. Or at least it should be but I’ll reassess if I need to lose a a few more pounds once I get there.

My plan for today is to attempt a bath and have help changing  my bedsheets, lets hope that plan actually works out!

Posted in Everyday living, Losing weight with chronic illness | Tagged , , , , , , , | 2 Comments

Potassium results

Posted on March 1, 2013 by

Just a quick one. Got my potassium test results back. Surprisingly but happily they’re fine, in fact they’re slightly over the top end of normal range. I can discount low potassium for giving me these awful ribcage cramps and spasms then. Must just be a trapped nerve from a rib subluxing and tight muscles.

Posted in Ehlers-Danlos, Pain, Test Results, Uncategorized | Tagged , , , , , , , , | Leave a comment